Head hurts tonight!

The girl dances on a Friday night. She loves dancing, and she looks so free and happy when she does.

Tonight she came home hungry. Not unusual as she is always hungry, but she didn’t know what she wanted to eat.  The problem is is that she only eats about four things and she didn’t want any of those.

Pasta? No

Weetbix with Vegemite? No

Toast?

Sandwich? No

All options exhausted then. Cue tears….

I put one option on the table – the one she hadn’t finished from before she left for dancing – and told her to go sit down at the table. Once she saw what it was she started crying that she didn’t want it, but couldn’t tell me what she did want. I said that if she didn’t want to eat then she should have a bath and go to bed, as she was obviously tired.

Apparently eyes hanging out of head and tears doesn’t mean you are tired! Just so you know…

I lost it at the point and said it wasn’t a restaurant and she was out of options. Cue more tears and collapsing on the ground this time.

I left her to it and went into another room to cool down.

A few minutes later she stormed past us to go to her room, where she proceeded to collapse on her bed this time, conveniently bypassing the bathroom and ignoring the fact that I’d told her to have a bath if she wasn’t going to eat.

After physically dragging her off the bed and into the bathroom, I then had to undress her, which is quite difficult when she is trying to put her clothes back on at the same time. I picked her up and dumped her in the bath (so so glad she is little!) and walked away… after saying that if she was not careful she would have to go and live with another family because I can’t look after her anymore.

Five minutes later she is calling me from the bath.

‘Now I’m worried that you are going to get rid of me’.

After reassuring her that I didn’t mean it and I was just frustrated by her behaviour, she got out of the bath.

And proceeded to get upset about everything else that was going on in her world. Like her body hurting everywhere, and her knee hurts as well, and the German Teacher at school is convinced that all kids with Aspergers are going to try to run away like a girl did in Prep who has it, but don’t ask her how she knows this because she can’t tell me. And she doesn’t want the German Teacher to know she has it because she will tell even more people about it, like her best friend in Year 4 did after promising to keep it a secret then telling everyone who then proceeded to laugh and point at her. And there is a mean girl in the Softball Team at school who keeps picking on her but she is in the Year below her and she only knows her first name but she is really mean to her and she is really missing her computer game and when can you get a new computer so I can play it and it’s not fair….and can I have some Tuna please?

This was all told to me in about two minutes flat, such was the speed of her talking.

I know that she holds everything in until she feels she is safe enough to tell us and then she erupts, but we have to go through the meltdown to get to what is upsetting her.

Hurts my head and now I need a drink. And chocolate. Or both….

Advertisements

The morning and the tiredness

I am exhausted.

It is only 8.30am but the girl’s morning antics have worn me out already.

She has choir at school at 8am which she loves and refuses to give up but she doesn’t help us get her ready to go.

Yesterday I gave her the day off school to give her some time to unwind after a really busy weekend and she was awake at 6.45am. Today when I need her up early I had to wake her at 7.20am and she still refused to get up. Sounds normal I guess….

Three different drinks were tried before she finally settled on a hot chocolate (with added ritalin). She didn’t want the orange juice that she asked for, nor the apple juice because it had lumps in it, so a small amount of chocolate milk was finally a winner.

I had dressed her as I yanked her out of bed because sometimes that is easier than fighting the flailing limbs when she is finally ensconced on the couch, so all I had to do was get her to eat breakfast, go to the toilet and brush her teeth. Easy!

Except we had 0.56 minutes to do this in.

After asking for an apple the girl sat and looked at it for 10 minutes before talking a microscopic bite out of it.

Telling her it was time to leave made her run and hide on her bed because I was being mean and was scaring her! Dragging her out of bed again and shoving her shoes on her feet I asked her to get in the car, at which point she went to the toilet.

Banging my head on a convenient wall nearby and counting to 500 did nothing to help me…..

After five minutes of sitting on the toilet the girl finally comes out and dawdles to the bathroom to brush her teeth. Luckily that doesn’t require too much time because the ritalin has finally kicked in and she is doing what she is told.

I love ritalin!!

Finally at 7.59 she is ready. Did I mention that choir starts at 8.00 and it is a 10 minute drive to get to school?

And what has the boy been doing in all of this?

He got up and ate his breakfast and got dressed and brushed his teeth and was packed and out the door and waiting in the car for the girl.

In his words  ‘what are we going to do with her?’  He cracks me up!

Is it too early for wine?

 

A major breakthrough

The girl has eaten vegemite sandwiches for the last six years at school. The good thing about this is that we don’t have to think too hard when we are making her lunch at night.

The boy, however, keeps us on our toes with his requests. We have been known to stand at the cupboard for several minutes before deciding on a filling for the sandwich. We learnt early on not to ask what he wants in them because he will just answer ‘sprinkles’. Hmmm… sugar on bread for a nutritious snack, nothing better!

However, the other night a miracle happened.

We had had roast lamb for dinner (yes we had won the lottery so I was able to purchase a leg) and the girl is rather partial to lamb. As we were eating I mentioned that I love it on sandwiches for lunch. The girl decided that she would like to try it on her sandwich the next day, or at least half a sandwich with the other half still containing vegemite in case she didn’t like the lamb.  And if she did like it, she said, she would want to have it every day.

No, I replied. We are not rich enough for that!

The next day I asked the girl how she enjoyed her sandwich when I picked up the kids from school.

‘Fine’, she said. ‘I ate it!’

I fell over in shock!

It’s all about me!

The boy is now sick.

The girl has been sick all week and now it’s the boy’s turn. In true Asperger fashion the girl declared that he couldn’t possibly be any sicker than she is. Because it is all about her of course!

The last school concert was last night and he struggled through it as he was just starting to get sick. He shivered all the way to the car even bundled up in a blanket, and fell asleep on the way home. This morning he crawled into bed with a raging fever. At least he kept me warm!

This afternoon he collapsed in a heap and crawled back into bed. He has been there ever since, except for a few minutes when he woke up thinking he was going to be sick. I think it is going to be a long night.

The girl however, is still sick but well enough to be annoying to everyone now. She has been in her pyjamas all day and is still coughing but being a little motor mouth and rabbiting on about nothing important.

I made her dinner, as I have to. The homemade pizza’s she does like. I thought I would make her something she enjoys to eat as she hasn’t really had an appetite this week. So I gave her the muffin pizza’s with the tomato paste on it as well as the bacon. Apparently she doesn’t eat it with cut up bacon on them, she only eats it with ham!  Umm… no, I have made it with bacon before I reply.

20 minutes later with the tantrums still going she attempts to eat it by pulling off all the bacon and then licking the tomato paste off the muffins. And the muffins still taste ‘different’ because the bacon had been touching them….

My head really hurt by now…. where is the freaking wine!!! 

After saying that she wasn’t getting anything else and the tantrum and tears not abating I gave up and made her a vegemite muffin, threw her in the bath and sent her to bed.

I left the man in charge of the bedtime routine and went for a drive to visit my mum. And have a glass of wine.

Grief

Two years ago my life collapsed.

As soon as aspergers was mentioned everything fell apart.

I didn’t know anything about Aspergers, but as soon as we started looking it up we realised that our daughter fit the profile. Then we looked at our son.

There was relief as well, that we weren’t just bad parents who couldn’t control our children.

Hopes and dreams went out of the window. Silly things like being able to play with the girls hair. She hates anyone brushing it let alone putting it in a braid or putting pretty ribbons in it. Giving her clothes to wear that aren’t ripped off again because they hurt. Of being able to ask her to brush her teeth without crying.

Not having to follow a strict routine every night, or having a meltdown over the simplest instruction. Or not having to serve up the same food for dinner because they don’t like anything else.

When they were newborns you have all of these ideas for your children, and they are gone. Will they be able to have a normal relationship with anyone? How will they cope as they get older? Will they have friends and find their own way in the world?

I grieve for a normal life.

A life beyond children having meltdowns. Beyond social skills groups, and occupational therapy.

I grieve.

Holidays! Oh yeah!!

Day 2 of the holidays!

Two weeks to go.

Arghhh….

Yesterday I spent the day at a friend’s house sewing costumes for the school play. We spent nearly 8 hours cutting and pinning and sewing together. Unfortunately we had 4 children between us.

My friend gave the children lunch, which was just a roll, but one of her children called it  ‘french bread’, so the girl decided that she didn’t like french bread and wouldn’t eat it then. Then she wouldn’t drink the milk they were offered because it was the wrong brand. And the watermelon had pips in it….

Then she got loud and started fighting with her brother, and they kicked and hit each other until I pulled her into another room to calm down with some drawing. Sporadically she would seek out her brother and my friends son and annoy them. We also managed to lose them for a little bit (on purpose) whilst they walked up the road to feed the paddock of horses and then walk to the local park. I think we got about 5.734 minutes of peace. Speed playing at it’s best.

So far today we have had the tantrums and fighting that I am sure every family has had. Both kids were banished to their bedrooms, where they continued to shout insults at each other from opposite ends of the hall.

They weren’t allowed out until their bedrooms were clean. This is ok for the boy, he doesn’t get as confused by that as the girl. The girl can’t cope with a very broad instructions like that. She needs specific instructions, like move that book onto the shelf, etc. I knew this but felt like messing with her. Every so often I would shout out another instruction just to start off again. I was being evil mum today….

A hour later she was still in her room, but had moved on from crying about not being able to clean her room to lying on her bed reading. This is where I usually find her if she can’t do anything, or flapping about in her underwear. She didn’t get dressed until 5pm when a little friend from around the corner appeared at our front door wanting the girl to play.

At the moment the girl is sitting on the couch eating her dessert (weetbix with vegemite). She keeps staring into space and saying ‘what’ whenever I tell her to keep eating. If I yell at her to keep eating or get into the bath she collapses in tears.

Maybe I should do it just for the entertainment value!

 

Lessons I’ve learnt

I have learnt some very valuable lessons during our time dealing with aspergers. I thought I would share these with you, so you can make an informed decision about whether you would like an aspergers child as well.

You won’t be able to ask your child to do anything without them falling on the ground/bed/whatever flattish surface is nearby. This goes for asking them to brush their teeth, hair, put on clothes, have a bath, do their homework, empty the dishwasher and pick up their toys.

Don’t expect to get anywhere in a hurry. As soon as you say you are ready to go, then the child will say that they need to go to the toilet. And stay there for a while singing. Then they will have to change their underwear because now it feels funny. And can’t put on their shoes because the socks are not right and they won’t be able to do up their shoes because they can’t get them on tight enough and they will fall off….. (get the picture)

Homework will be beneath them. Don’t ask them to memorise spelling words because they have already learnt them when they wrote them down in their homework book that day. Don’t bother trying to get them to look at them ‘just in case’ because that will result in major tantrum. Wish I knew what it was like to have a photographic memory…. This also goes for learning music and lines for a play. They can remember everyone’s lines which comes in handy if someone is not there for the production.

Never suggest they eat something. Food is not liked. If there is any food in your cupboards then just throw it out now.

Maybe just keep the vegemite.

Sleep is also not liked. The child will endeavour to keep you in their bedroom late at night and then keep calling out overnight to help put them back to sleep. They also won’t care that you are tired and grumpy in the morning, because they are not. You will miss out on all of your tv shows as you go through the whole nighttime routine. Every. Single. Night.

You will get told information about subjects that you knew nothing about. And would not care to know about. Like the series order of a particular tv programs, who is in the tv series, what else they have been in, what lightsaber each character has in starwars etc. Seriously, why do they think we care!!

Hygiene is beneath them. You will save on water. And toothpaste. And shampoo.

Never expect any sympathy. They don’t care. If it is not about them then they have no interest at all. So you might as well just shut up and get on with it.

Don’t go anywhere with sun, sand, bees, flowers, strong smells, or loud noises. Or cold.  As there is nowhere else to go you might as well stay home.

There are many many other delightful tips I could share with you, this is only a taste. But it might help you make your decision easier.

Remember! Keep the vegemite!

 

 

 

Making pizza asperger style

Last night we made pizza.

The girl likes pizza. Meatlover from Bubba’s Pizza to be exact.

I didn’t want to buy a pizza this week, we had already had our weekly take-away so I compromised by making one. The girl helped by mixing the dough in the pan. When I put the honey in the dough she said that she never eats honey. I said she did everytime she ate pizza and she was most surprised.

The goey dough was a bit much for her, but she got through it but ran to wash her hands as soon as possible. Tomato paste was next. A nice plain tomato paste with no added flavour for her. The ham went on, the girl was having fun making food for a change – instead of removing herself far far away from it. Cheese went on after a ten minute debate about whether she eats cheese on pizza, and is it the same type that she usually eats. It was a very difficult decision but cheese went on in the end.

I put semi sun-dried tomatos, and capsicum on my side – needed to add some more flavour to it.

Cooked the pizza and served.

Apparently the bottom was burnt (it was a nice brown colour) and the cheese was different and it ‘didn’t taste good’  so she didn’t eat it.

I then toasted a muffin, whacked some tomato paste and ham on it and served to the girl.

She loved it!